Tuesday, February 24, 2009

To do or not to do

That is the question…

I REALLY don't want to have chemo for 6 months (or any) . Having this break has been so nice. Granted, the chemo is one week on and 3 weeks off. I keep wondering if there is a point doing it if the tumour is low grade. My personal feeling is that I should build up my strength. (lets ignore the fact that I am justifying) If it is going to aid the radiation effectiveness, then I suppose I should do it. (But I don’t know if it will) I waited too long to go for the operation, which in hindsight (that horrible thing), I shouldn't have done. So maybe this is the same?

Today they called to confirm the appointment for the 9th March and I (terrible reluctantly) agreed.

Oh woe is me.

Lelo

Leo's name have been changed by the kids on this birthday to Lelo - thanks to Sam, Kathy's son. I think that it may stick with the kids ... Why do you have to change names Kathy!

Sunday, February 22, 2009

Leo's Birthday



Not the best pics - I am waiting for mom to send me better ones. I also need a bit of time to corel draw some areas ... d:)

Thursday, February 19, 2009

The girl next door

How bizarre is life! You won't believe it but my next door neighbour, is going for the exact same brain operation! She is LITERALLY in the house next to ours. She is going to Cape Town, meeting with Dr Butler and Dr Melville. They are doing the whole grid thing, scanning and surgery.

She is about the same age as I am, has 2 small children and started having quite bad seizures during the second pregnancy. She does not have a tumour, but rather epilepsy in a particular area that developed when she was at university. No-one knows why it developed. She has focal seizures which means that she looses feeling and ability in her left hand and eye and the occasonal grand mal. Can you believe that?

Tuesday, February 17, 2009

Moms

Yesterday, I said to my Mom that I want to retire from being a mother. What hard work. You are busy with kids all the time. It does take it out of you. Obviously I wouldn't change having kids for the world, but a break would do me good. I think of all the moms sitting (and alot of dads) with their kids, in hospitals, with devotion.

My friend has just had a had a premature baby and it is distressing to know that he is in an incubator. We all feel the pain our children go through and want to take it away. It doesn't matter how old they get. We want the best for our children in all aspects of their life and sacrifice alot of our own. I think we become tough when we become moms. (must be child birth!)

I want to thank my Mom, I know this hasn't been easy for her. She has been supportive every step of the way, with nothing in return. She hasn't asked me for anything. I have not been able to give much back, I feel that she gives me much more than I deserve.

So congratulations if you are a mom. The world has become a better place for it.

Monday, February 16, 2009

It is finished

I got called in on Friday evening because the machine was working. So I had my final radiation on Saturday. What an emotional time for me. I was so happy it was all over. As I was leaving, the radiologist gave me a hug and wished me well, this gesture caused the flood gates in my eyes to open. I hadn't cried once through all of this and now that it was all over, the relief was too much. I really wanted to thank them a bit more but my throat was so choked up that if I had said more than "thank you" I would have started howling too.

I felt a bit bad that the other patients waiting to go in saw this. They had no idea that it was my last one session or why I was crying. They might have thought something went wrong the way their eyes were beaming at me. Or perhaps they thought that tears squirting out of the side of my face is a side effect? When I got to the car, James & the kids were a bit distraught thinking I was hurt. I mumbled that I was just happy and this left them even more confused. Luckily I was in the car with boys so no more questions were asked!

I was asked to keep the mask for 5 years in case they need to refer back to it. I haven't looked at it yet, I just put it into the cupboard.

As I was lying there for the last time, I just prayed to God that this had worked. Thanked Him for keeping me safe and that I would never have to do this again. I just prayed that I could be my old self again, get my life back and not have this affect me anymore.

Well I started painting again on Saturday for the first time since November.

Friday, February 13, 2009

Booster fiasco II

Yesterday went much better, at least I knew what I was in for this time! So no kicking of legs and acting like a crazy woman.

In Bar's comments under the last post - she mentioned "only in Africa" That is SO true. I enjoyed watching the movie Blood Diamond for many reasons. One of those was the take on Africa. In the movie Leo says (with his really bad interpretation of a South African accent) "TIA" This is an excuse for anything and everything. It means "This is Africa" We have found this so funny.

I had an American man ask me how many people would use the software - I said there are supposed to be about 20 users but TIA - you will be lucky if anyone uses it.

When someone asks you why is the meeting late - TIA,
why is no-one at work - TIA,
why was there a strike this week - TIA,
why does our ruling party have a host of convicts - TIA
why are there people napping under the trees along the roads - TIA (this is what Sandra and Sven - my German friends - couldn't believe when they came to South Africa)

Why is the radiation machine busted AGAIN today - TIA! Yes it is busted again, so I will have to come in next week. I can't pretend that a busted radiation machine doesn't bother me... Luckily for them we all know how things work in Africa. In their favour - they have treated me with nothing but professionalism and kindness.

Some lighter news - Anastasia went to her first "Social" last night. The girls got all dressed up. James & I couldn't help but laugh at the awkwardness these kids felt and be totally grateful to be past that stage. I can still remember those horrible slow dances where you turn in a circle or sway while holding hands. James gave Anastasia a solo demonstration, she was gagging and trying to strangle him at the obscenity of the visual. James is keeping a close eye. He know what boys are like even if TIA

Thursday, February 12, 2009

Booster fiasco...

Yesterday I had to go into the hospital at 5pm as they had fixed their machine. They set up 2 smaller beams. I am having a 4 treatment booster in the area they felt was high grade. The set up was fine, it feels weird being moved around with a mask on and not knowing where in the room you are.

The booster radiation was TERRIBLE! They didn't tell me that it would be a 4min straight beam from the one side and 2 1/2 min beam on the other side. My radiation has never been that long in one dose. So anyway, I am lying there and it is getting hotter and hotter. I am having an absolute panic that the machine is busted and I am going to be completely brain fried. Now, I cant move my head or get up or talk, so I start clapping my hands and kicking my legs wildly. I know they have cameras in there and they can hear me. I am also panicking because the ladies working there are young and relatively new and only started half way through my treatment.

They stop the machine and come rushing in worrying that I am having a seizure! I am trying to speak via this mask and they say that this is normal for a booster and apologise profusely for not telling me. And then said I only had another 1 minute of that side and another 2 1/2 min on the other side. I calmed down a bit, it was hard because my blood pressure went through the roof!

Its funny but when my blood pressure rises, I get this stupid head clicking and I feel I get dizzy. I am really worried about the effect that it is having on my ear as it keeps buzzing. I will have to chat to the doctor about that. So my last treatment is on Saturday morning so that I don't have to go into next week. I left there feeling rattled and asked James to rather take me there these last few times. It was the first time I can honestly say I was really afraid. From now on, I am really going to say I "HAD" a brain tumour.

Oh and just from that one beam, a patch of hair stood up straight and fell out! What a fiasco!

Tuesday, February 10, 2009

Radiation postponed

I am not sure for how long, but the radiation machine is not working! So I've no treatment until it is fixed. Wow, what does that mean? I can't say I was upset not to go, even if I am prolonging the inevitable. A taste of things to come!

So no, it is not 3 days to go!
d:)

Monday, February 9, 2009

Another day

Well another closer to finishing. I have found that, against my desire to party, my body is not co-operating. This has become very tiring.

On Saturday, James & I went out to the movies and for supper afterwards. I decided to be brave and went to the same restaurant where I had a seizure previously. Needless to say it was very embarrassing and a real party pooper. So we arrive at 7:30pm and by 8:30 I was done. I think it might have been a bit of paranoia that I was going to fall over again. So movies must be too much for me. I came home, managed to brush my teeth in 30 seconds and crashed into bed, falling asleep just about instantly.

It seems like the side effects are hitting me now. I notice the wrong words, memory short and of course the tiredness. Anyway I am keeping up the vitamins and have gone on a diet of no dairy and very little sugar. It seems to be helping. I think my tastes may have changed. This might also be mental.

Kids and family are going well. We are back to the drop offs and pick ups everyday, making lunches in the morning, homework and an endless amout of events for them. James & I would happily stay at home and do nothing, but life dictates otherwise. As I am sure most parents know! Leo turns 3 on the 21st Feb, so there is another party to organise...

Sorry for those I haven't emailed back yet, its all on the list! At least there is light at the end of the tunnel!

Thursday, February 5, 2009

sleepy

I think will all the busyness going on, the tiredness has kicked in. Today my 11am I was done. Went for a nap but it didn't last long because Leo came back from school. No way was he going to let me get away sleeping. Eventually he had to be bribed to play outside with Elizabeth.

How do I bribe him? I tell him I am going to take him to Walmer Park. This is a shopping centre! He is as addicted as I am to having a coffee (milkshake) and snack and do a bit of shopping. At least I don't have to drag him along... but the pressure!! He knows how to swipe a credit card AND even signs in the signature space (he's very meticulous - not all over) He thinks if I have a credit card, I have money! All this an he is just short of 3!

PS - thanks for the lovely comments in my last post! d:)

Tuesday, February 3, 2009

Counting the days

I think I need to have a counter on my website. I finish radiation new week Friday. This means I have 8 sessions left over 10 days. Just counting down is a great feeling. As nice as the people are there, I am SO ready to say goodbye.

I look like I have a split personality with one side with hair and the other without! I just turn the way that reveals my mood. BUT like I said, I don't have to do this again. Thank God for small blessings. I am ready for the big ones now...

I have been interviewed for People talk magazine. It is a local magazine and it will come out in March. I really have to look at it before he prints it because am sure talked him in circles! I will keep you updated

I have been going into the office and been busy doing a tender for a very nice IT job. While you all praying, maybe add this to the list! ;) It might be a case of "be careful what you wish for"

I just want to thank you all for the support and prayers. It has made this journey bearable and I have enjoyed connecting with so many people. My love, thoughts and prayers are with you.

Monday, February 2, 2009

A beautiful vein

I must say that being told that I don't have any grade 3 tumour has made me feel like it has all been worth it. It has given me new hope on life. I only have 2 weeks left of radiation and then that is the end of that chapter. Yay. I can't wait to get back to normal - by normal I mean 5 years ago. I believe that prayers do work.

I have to go for DNA testing to see if I have a gene defect. This is done in the UK and my tissues will be sent from Cape Town. It is recommended that I do this because full chemo. If there isn't a defect, then the chemo tablets over the next few months will probably not be effective.

Last week when I had the MRI, they injected contrast. It was not fun to go through and painful. They couldn't get it into the vein properly. So I have a bruise. All I could think of was the people going on IV treatment. I still get a pain thinking of it.

Today I had my usual weekly blood test and was dreading going. I told the lady that took blood that it was sore last week and I had a tough time. She said she couldn't understand that because I had such a beautiful vein and added that she has seen alot. No-one has every told me that before!

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